There is nothing better than waking up in the morning, putting on my robe and slippers, grabbing a cup of coffee, turning on my computer and reading an inspirational, patient story like the one below. Plus, Jarrett’s thoughts about the “waddling penguins” and the “Adam Tinmen” made me giggle. That said, I thought you might like to read about Jarrett Roberts. He writes:

Hi Adam,

Valentine’s day – with the emphasis on love and hearts – has taken on a new meaning to me and my wife as I am on day 22 of my “second chance at life” as I had my bicuspid aortic valve repaired by Dr. Bruce Lytle at the Cleveland Clinic on January 23, 2009.

Jarrett Roberts – Arctic Marathoner And Valve Repair Patient

I found it interesting (at the Cleveland Clinic) to be one of the younger patients in for surgery. The nurses were all excited that a 6′ 7″ marathoner – I’ve done 83 including Antartica in 2005 – was in for surgery (as they normally get the unusual heart valve cases that other clinics won’t touch).

My bicuspid aortic valve was accidentally discovered less than two years ago during a routine cardiac calcium CT that was misdiagnosed as an aortic aneurysm. The follow-up tests showed that the radiologist had flipped the numbers and I didn’t have an aortic aneurysm. However, I did have a bicuspid congenital defect of my aortic valve.

The cardiologists at the Cleveland Clinic were amazed that it hadn’t been discovered before, but after their tests said that the “mumur” was one that was almost impossible to detect. Sometimes medical screw-ups are a blessing in disguise. In October of 2008, I was given 9-12 months to live without correcting valve surgery.

I have found the biggest difficulty during recovery is wanting to do more than I should and holding myself back. However, from doing marathons, I know that I have a long road ahead and I will eventually make it to the finish.

I begin cardiac rehab next week and have re-read your chapter on that again for insights. I hope to rebuild my endurance to eventually do another marathon later this year or early 2010. Eventually I would like to finish my goal of completing a marathon on every continent and 100 career marathons. The Cleveland Clinic cardiologists said if I mainly walked them it shouldn’t be a problem, especially since I’ve did 83 marathons prior to the discovery of my bicuspid valve.

My wife Kara and I have already signed up for the Coronado Bridge 4-mile walk on May 17, 2009 in San Diego as my first official post surgery race. We are celebrating our five year anniversary and are staying at the Hotel Del Coronado for the weekend. It might be cool to get a group of your readers together for the walk. Just a thought. 🙂

I was curious. I have been a long time follower of John Bingham (a famous marathoner and editor of Runner’s World magazine) and am one of his “waddling penguins” (those of us marathoners at the back of the pack). Do you have an affectionate nick-name for us fans of your book and blog (i.e., Adam’s Tinmen and Tinwomen)? If not you should think about getting one for us. 🙂

Anyways, I just wanted to send a quick email thanking you for your great heart valve book and website which has been a tremendous help during the past six months. You helped my family and I know what to expect and make the “journey” less challenging.

Hi Jarrett,
I too am finding that I want to do more than I can or should at almost 5 weeks post op. I will begin cardio rehab this week too. I have horses & ride near the beach here on the Central Coast of California. I have a trail through my property for other riders to use for access to the state park & beach … I want so badly to get on my horse & GO!! For now … I do laps around my home & barn & try to keep my chin up when I see others riding out … We shall get there in time & like you I can’t thank Adam enough for all he does … it has made this process SO MUCH easier for me … just knowing what to expect. What a comfort in confusing times!!

Gregg Pearlstone

I was recently diagnosed with a bicuspid aortic valve and a slightly enlarge aorta.
This is all very new to me. Kind of through me for a loop. I have a family history of heart problems, but did not know if their problems had anything to do with a bicuspid valve. I understand it is hereditary. Anyway, as a result, I have stayed very focused on exercise. I have been an active runner for almost 30 years. Kind of ironic that I find out after all this time that my heart problems would come as a result of a birth defect.

I am interested in learning more about what to expect. I am to go in for either an MRI or CT scan to complete the evaluation of my situation. My current doctor also has me scheduled for follow up echocardiogram in 6 months to check for any more enlargement. I guess he wants to establish some sort of baseline. Any feedback anyone wants to share on this subject would be appreciated. I do intend to buy Adam’s book to better educate myself. Glad I came across his website while surfing for other information. I am also very interested to see the surgeon database. Assuming it will be a while before the list if built up enough for use. If I am mistaken, please advise. I am also curious as to other’s feelings about a second opinion. I am sure this is the right thing to do, just don’t have any experience with this from my past.

Regards,

Gregg Pearlstone

Winona Blake

Hi Jarrett,
I can relate that you want to do more and the frustration of having to hold back. I am 71 yo and had Mitral Valve repair at Cleveland Clinic Sept 2008 by Dr Milhaljevic. I found Cardiac rehab very helpful, and thank Adam for encouraging us to do that. While in C Rehab, I found my longterm means of exercise/conditioning, the indoor rower. I have been using my own for the past 2 months, and attempted this month’s challenge and learned that I overreached – got tired, dizzy, etc, so listened to my body and backed off to rowing less distance. I find it frustrating that my mind wants to GO, and my body isn’t ready quite yet.
Learning that it really does take a full year to fully recover. My MD said that is because the scar for the open heart surgery needs that time, as the heart muscle cannot ever rest to speed healing.
Good luck.
Winona

peter willard

I would like to know what kind of valve jarrett roberts had put in.I’m 67 male and had a cow valve put in.
thank you

Jarrett Roberts

Peter,

It has been awhile since I have looked at this page, but I did not have a replacement, I had a repair (they use your own valve). I was hoping to get a repair and in 2009 only a handful of surgeons did them. I got my repair from the legendary surgeon Dr. Bruce Lytle who pioneered and perfected the repair surgery at Cleveland Clinic.

Three years later, I am planning on doing my 90th marathon (seventh since surgery) in August 2012.

Jarrett

Andre

Hey Folks,

I had a Bicuspid 2-leaflet Aortic Valve replaced two years ago. We had watched and monitored it for about 4 years to check the size and calcification. From my understanding, your Aortic Valve is supposed to be 2.5cm and mine was about 0.7cm. I never experienced any symptoms (Fatigue, tireness, shortness of breath, etc..), but knew I was close to that point. So, between myself, my wife, and my surgeon… the decision was made to replace it. I chose the Bovine Cow Tissue valve, because I wanted to go back to my normal health condition. ( i typically wake up every morning feeling great). The other choice was a mechancial valve, which is supposed to have longer life, but you have to take Cumadin everyday of your life, go for blood tests, bruise very easy, and possibly bleed excessively if cut. I did not care for all of that, so I chose the cow tissue valve. They typically do the Cow Tissue in older patients. I was 55, so a little young for that, but chose it anyway.

Standard procedure before Open Heart, is to have another Heart Cath. The doctors like to check one more time what they are getting into. They check all the valves, muscles, and arteries. I was in good shape, other than my valve, and did not require any bypass grafts. The doctor did say my Aortic Valve was moving like concrete and was so calcified, that I had made a great decision to replace it. He said it would not have lasted much longer.

My surgeon did a great job and my surgery was less than 3 hours. You are typically in ICU for a day , then a 5 day hospital stay.

I went back to work after 5 weeks, but I recommend a good two months to really get back in the groove.

Everyone is different, but the Open Heart Surgery is not a painful one to recover from. However, I did have a few quirky issues to deal with. My shoulder was sore for a while, I could not lift my head up all the way back, did not eat well, could not lay down in the bed very well, and I had a knot in my stomach. But over a few weeks, they all dissapeared in time.

Just the opposite …..

We just brought my 81-year old Mom home from Triple Bypass last Friday. She is doing amazing. She is eating, laying in the bed sleeping great, no pain, walking laps, etc…. She is doing outstanding. No complaints at all.

So do not be afraid….. they have the heart down very well and can do amazing things.